Following Sleeter's Path

In 1987, scholar and educator Christine Sleeter offered an insightful re-reading of the emergence of the category of Learning Disabilities (LD) in America's Cold War era. She revised the standard narrative of scientific progress in our understanding of learning differences among school children, in particular the shift from the stigmatizing language of retardation and minimal brain damage to the more acceptable label of learning disabilities that Samuel Kirk introduced into educational practice in 1963 (Kirk 1962; Kirk 1963). Sleeter revealed the unwitting ideological underpinnings of race and class among the overwhelmingly white middle-class educational and family activists who created and benefited from this change. In so doing, she also identified the stark stratification of the kinds of categories assigned to children's learning differences in the period leading up to 1987. In her view, the high stakes of scientific literacy in the "space race" against Soviet expertise led to the unquestioned tracking and the sedimenting within the educational system of existing class and race hierarchies.

As anthropologists studying the current landscape of learning disabilities in New York City, we are deeply indebted to Sleeter's critical insights into both the contemporary moment and the highly stratified historical conditions that produced the intense concern with literacy and academic achievement in a post-war labor market that required escalating white-collar skills, while it reinforced class and race privilege. From the vantage point of the early 21st century, the category of LD has become far more widespread and is now part of common social discourse in ways that demonstrate its historical evolution since Sleeter's original findings. In this article, we follow Sleeter's path-breaking focus on parent activism, as an arena that has expanded exponentially along with the increasing — if imperfect — inclusion of special education students in the public education system over the last three decades.

In the interests of full disclosure, our research began as a result of our many years of experience as mothers of children with learning disabilities. Ginsburg's daughter has a rare genetic disorder, Familial Dysautonomia, which affects her autonomic nervous system and has consequences for learning that are not well understood, along with her more global medical problems. Rapp's son has classic dyslexia requiring accommodations for reading and writing. We became interested in this topic because of our own difficulties navigating the educational system on behalf of our children, but are not part of any particular activist group except in our capacity as researchers. We have been carrying out ethnographic participant observation research on "Cultural Innovation and Learning Disabilities" since 2007.1 The interviews we use in this article are drawn from a sample of over thirty interviews conducted in 2009-10 with mothers who we contacted or who contacted us via several internet support groups for families involved in special education in the New York area, where an announcement of our research project appeared. While all those we interviewed consider themselves to be strong advocates for their children, most are not oriented toward more formal activism, with one or two exceptions. While all had to have computer access in order to respond to our call for interviews, most were of modest economic background. Additionally, the sample "snowballed" beyond internet group members as interviewees spontaneously passed on our names to friends they had made in the process of getting services for their children. We were particularly impressed and moved by the desire many women expressed to be interviewed and have their struggles formally acknowledged via our work. Many spoke compellingly about the need for the stories of families such as their own to be heard by a broader public. Although we did not sample initially for diversity, the people who volunteered as research subjects were drawn from all five boroughs and represented multiple racial, ethnic, class and educational backgrounds. Approximately 30% of our sample is African American; about 15% is Hispanic. We offer these numbers with considerable hesitation: not only is our sample too small for such statistics to be representative of any larger trends, but the very meaning of "African American" and "Hispanic" erase enormous diversity within the populations that travel under those labels.

Based on our research with NYC parents of children with Individualized Education Plans (IEPs), it is apparent that advocacy is far more widespread — often crossing class and race lines — than in the past; parental vigilance, with rare exceptions, is almost a requirement if a child is to receive appropriate services. We also underscore that the meaning of educational credentials — and what it means to have LD — has changed due to a number of developments that have greatly enhanced the social acceptance of children with disabilities. Central to this shift in the zeitgeist is the familial expectation of their rights as citizens, including the rights of their children to a "free and appropriate public education", despite the uneven distribution of services and the complexities of current bureaucracies and educational law. In other words, we argue that parents (and especially mothers) are increasingly engaging in advocacy on behalf of their children — from modest efforts, such as fighting for a classroom placement, to deeply engaged actions of those who organize "speak-outs" and demonstrations at City Hall in support of inclusive education. While stratification remains an enduring aspect of American education, advocacy is also increasingly broadly distributed. Indeed, we would suggest that one of the under-recognized legacies passed on from the activist parents Sleeter identified is the growing recognition of the necessity of all kinds of parents — and especially mothers — to learn to "work the system" on behalf of their atypical children. Of course, this does not solve the inequalities of the system and the fact that most families are not engaged in these processes on behalf of their children; as we explain below, simply navigating the system can be overwhelming and intimidating.

While class and race certainly continue to shape the opportunity structure for families from a variety of backgrounds, we have been impressed by a countervailing trend among "special ed moms," a trend we call "the social distribution of moxie." In over thirty interviews with mothers from diverse social worlds — ranging across working-class and immigrant families, to the comfortable middle class, to those with upper-class privilege, and with race/ethnic differences distributed throughout — we note a shared, hard-won awareness of what it takes to launch an atypical child into the world. This knowledge is necessarily learned, often with great difficulty, in the particular social location of each family. However, once they have gone through this "rite of passage" of accepting their child's difference and the challenges that it presents, there is a remarkable sense of recognition of shared experience with other parents whose children learn with a difference, suggesting a sense of existential kinship built through the distinctive kinds of labor required in parenting a special needs child. Occasionally, this leads to contemporary coalition-building across class and race lines in ways that complicate Sleeter's original findings. The experiences of the parents we interviewed are historically differentiated from those analyzed by Sleeter due to a number of key sociological variables. These include:

• The increased survival rate of medically challenged infants and children who remain with their families rather than being removed to institutions, eventually requiring a public school placement or its equivalent;
• The increased recognition of previously commonly misdiagnosed or recently medicalized conditions, from ADHD to a range of disorders on the autism spectrum;
• The expanding coverage provided by legislation concerning the educational rights of those with disabilities, from the periodic renewals of the IDEA, the passage of the ADA, and the subsequent groundbreaking Supreme Court cases, notably the Nickerson and Carter decisions;
• The wide acceptance of new scientific explanations of atypical learning patterns provided by neuroscience and genetics with attendant medicalized notions of diagnosis and intervention;
• The increasing positive presence of disability related topics and characters in popular media, ranging from mainstream cinema and television to independent and educational documentaries to digital interactive forms, such as websites and blogs; and,
• The growth of curricular innovation to address different learning styles in both the public and private sectors, in an effort to address and destigmatize the presence of "all kinds of minds" in American classrooms (Levine 1992)

The Everyday Life of Special Education

Since the Cold War period and the passage of the IDEA in 1974-5, the educational system has undergone enormous elaboration in terms of accommodating special needs; families have to learn to negotiate its complexity if their child is to receive even minimal entitlements. While Federal law mandates that services be provided for all those who merit IEPs — estimated at 15% of the nation's student population — each state designs its own special education programs, as well as the sometimes baroque, but uniquely American, funding mechanisms that require combinations of local, state, and federal monies. In New York State, for example, there are 716 school districts; thirty-two are in New York City. In each of these, a family whose child is diagnosed with any disability that requires an IEP needs to go through a variety of gatekeeping mechanisms, most notably an Annual Review by a team of specialists assessing their child's situation at their school district's Committee on Special Education. These specialists — who may or may not know the child — consist of a social worker, a school psychologist, a general education and a special education teacher, a parent advocate, and one or both (or more) parents. After the age of fourteen, the student may be included as well. Ideally, at this age, the team is also working with the family to design transition planning for students as they exit from high school and IEP entitlements, although New York City is well-known for being out of compliance on this crucial matter (Children 2007).

At the end of the annual meeting, the team is supposed to hand the parent a completed IEP that becomes the contract for the provision of the child's services during the following academic year. These may be as simple as the need for ramps in a school building, to a far more complex profile that requires occupational, speech, and physical therapy, the use of resource rooms or collaborative team teaching, specifying teacher-to-student ratio, or particular curricular techniques. The child's school is obligated to provide these services; however, parents quickly learn that unless they make an effort to be sure that they are in place and consistently available, they may exist only on paper. This situation has intensified as local educational reform has given principals authority over the distribution of an unforgiving school budget, too often forcing them to choose between providing individual IEP-mandated services, such as occupational therapy, and other kinds of programs that might serve a larger constituency, like art or music.

In New York City, finding an appropriate school is much like the fabled search for an apartment in the metropolitan area: it is all about neighborhood availability and local knowledge of where the appropriate supports might be found. We are finding that such knowledge is widely distributed, but mostly through informal mechanisms; mothers of diverse backgrounds work hard to gain knowledge about and then fight to find placements at schools known for their support of "IEP kids." This is a particularly challenging task since the Department of Education (DoE) often does not know what kinds of services are available in different schools. So the social distribution of parental knowledge of resources has to follow other pathways based in large measure on how families understand the needs of their child (Jacobs, 2009). Clearly, the classroom supports for a child with Asperger's syndrome will be very different than those for a child with dyslexia, to name one common example. Finding a setting in the right neighborhood that actually has the specified services and an opening for the child can be daunting work. Furthermore, classroom teachers may never actually receive the child's IEP until well into the school year, if at all. Inevitably, the task of being sure that services are indeed provided for one's child falls squarely on parental — and usually maternal — shoulders. In other words, it is up to the individual parent to monitor the fulfillment of the IEP's contractual obligations.

In the event that the DoE fails to find a free and appropriate placement for a child that meets the services spelled out on the IEP, the parent has the option to locate a private sector school that can provide those resources. Once they can demonstrate the DoE's failure, they can sue the DoE for tuition reimbursement by requesting an Impartial Hearing, based on a 1992 Supreme Court ruling, colloquially known as the Carter decision. This has dramatically increased the access of children with disabilities to appropriate education as, in theory, it expands the range of available school settings into the private sector. This process, however, is long and costly and requires constant vigilance to bureaucratic detail. For that reason, families of modest means de facto find this process prohibitive, and can only pursue this option with the help of non-profit groups that have emerged over the last decade or so to help low-income families obtain social justice in education.2 Even with the help of such groups, this process is by no means transparent and requires considerable self-education, initiative and tenacity on the part of parents.

Indeed, learning to navigate this system ourselves as mothers of "IEP kids" strongly motivated us to turn our questions into a research project. One of the first queries we posed to ourselves was: "How do parents do this if they don't have the confidence, the time flexibility, money, and knowledge of their rights to jump through the hoops that multiple bureaucracies place in the way of securing what are supposed to be the child's entitlements?" Now, many years later, having carried out qualitative research with multiple parents from many backgrounds (as well as educators, scientists and media activists), we have discovered that this question is virtually universally distributed across our sample, which admittedly favors advocate families. In interview after interview, regardless of the class position or racial/ethnic affiliation of our interlocutor, our respondents, after describing their longstanding and unremitting efforts to get their child educated, would spontaneously pose the question: "What would our children do if they didn't have someone like me as a mother?"

What is the significance of the trope of the heroic (or at least activist) mother? Such mothers, we suggest, are made, not born. Given the findings of our NYC data, we would argue that the very complexity and often adversarial nature of the educational bureaucracy faced by those seeking special education services, forces a very high learning curve on those that manage to make it work. No one knows automatically — or discovers easily — what it takes to advocate for a specific child, let alone to become an educational activist. There is a kind of "initiation rite" that each individual parent goes through. Successful parents learn to be vigilant and demanding at every step: for example, they eventually learn what it means to get an annual review committee at the Committee on Special Education to construct a viable IEP for their child, make sure that it ends up in the hands of a specific classroom teacher who follows its mandates, or that a reluctant principal with a tight budget provides Occupational Therapy services at the school.

Often, they report that such learning took place through formal or informal networks forged with other IEP mothers. Over time, these mothers find others — in the Committee on Special Education (CSE) waiting room, in Parent Teacher Association (PTA) meetings, at playgrounds, in religious circles — and begin to build alliances, share information and strategies, and sometimes become engaged in issues at a broader level. For example, a group of mothers in Brooklyn have been meeting for the last few years at a Department of Education Learning Center attended by all of their children with IEPs. Some joined the circle by serving as a parent rep at their local schools, while others found part-time employment at the Department's local offices. Collectively, they are both critics and catalysts at their DoE district offices. They teach one another the skills required to secure resources for their own and other children classified for special education. And they get out the word that they would be happy to help any parent whose child has an IEP to strategize. In short, we are arguing that the educational bureaucracy — by its very inadequacies — require "learning opportunities" for parents to become advocates as they seek to help their children. Those who are able to stand up to these difficulties with spirit and courage exhibit the moxie that we argue is socially distributed across class and race lines.

Throughout our interviews, certain powerful themes appeared many times. First and foremost, many mothers spoke of their initial fear for their children and the way they might be seen by other kids: "They're such bullies, the other kids make fun of the special ed kids," said a mother from Queens. Her concern was especially echoed by parents whose children were on the autism spectrum: many felt well-served by their children's classroom placements, but worried continuously over the reception of their kids from students at the larger schools, of which the special ed classroom was a small part: "They make fun of my kid, when he gets disoriented or lost, they don't want to help, they just want to jeer." Many felt that the schools were not organized to cushion the shock of prejudice to which their kids were continually subjected. But several also noted that outstanding teachers looked out for their kids socially, while being demanding academically: "Mrs. A. says, 'don't play the charm card with me, David, I want to see that homework done with no excuses young man!' But then she goes and makes sure he's with his brother for the walk home, even though he's twice his size." That mother fought with the local CSE to retain her son in Mrs. A's classroom, even insisting that the child follow the teacher when she was transferred to a nearby school. Other mothers were not always as successful: "I just smile sweetly and tell them again and again that they have to match up his IEP to what's in the school. But they don't always listen to me, and last year we had a really, really bad year, my kid was suicidal," said another Queens mother. And a Manhattan mother's frustration with the bureaucracy pushed her to dramatic hyperbole: "The DoE is a terrorist organization: The system is broken. The CSE is a total intimidation racket; the principal is intimidating, he intimidates the teachers, they take it out on us." A mother who was active in local politics and had lived in the same working-class neighborhood of Queens in a house that had been continuously occupied by her family for four generations, described her strategy for getting services for her LD child: "Every time they see me at the DoE, they say, 'here comes Karen McCarthy (pseudonym), that bitch from hell, wanting something for her kid again.' Damn straight, I do." And in Brooklyn, another mom sensibly posed the question to us, "Why can't they just keep a list of the best places to send your child once you've got a diagnosis? Why do we have the same meeting every year, and every year they offer another placement that isn't the right one and I have to go and find another?" While these are a handful of statements drawn from over 30 formal interviews and an equal number of informal discussions, they index widespread discontent on the part of mothers with the obstacles continually placed in the way of obtaining what should be a child's right. Learning to stand up for yourself and your child was a common experience that mothers described.

African American mothers (approximately 30% of our sample) sometimes expressed the specific burden that they strongly felt was attributable to racial prejudice:

"I tried to move her to a private school, her teachers and the assistant principal in her PS were very supportive. But when it came to the Impartial Hearing, the City fought me tooth and nail. They made a big deal about my separation from my husband, tried to chalk up Pearl's reading problems to my social disorganization. They practically called me an inadequate mother, almost said, 'black single mom'. Meanwhile, the private school was rooting for me, but it didn't matter, the judge was biased against me."

Another African American mother with an elite professional position talked about how conscious she was of racial politics in the three schools through which her eight year old had already circulated: "Everywhere we go, we're aware of having to be 'role models,' otherwise my kid will be labeled as another black child run amok." In this case, the mother was making a point which pertained to the African American middle-class community, as well as to (predominantly) white school administrators: she felt that her child was held to unrealistically high standards, and no understanding or empathy was given to her special educational needs until she finally found the right placement, by which time the child's educational life had been substantially disrupted by constant moves.

Throughout our interviews, virtually all mothers asked the rhetorical question we discussed earlier that set us on this research path: "What happens to children who don't have me for a mother?" or, "I don't want to say anything bad, but in that class a lot of the other special ed kids are in foster care, those parents don't come to meetings. Those kids are just lost," or, "where would Lanie be if I wasn't on her case?" were common refrains. Again and again, the necessity of maternal advocacy emerged as a central concern.

Reframing Stigma

Clearly, not all parents become advocates; their children are indeed at high risk of being defeated by the obstacles the system creates. Grim statistics are testimony to this social fact: 85% of high school students with IEPs do not graduate (Children, 2007). Among young adults with disabilities, unemployment is shockingly high.

Such statistics, along with the daily challenges of living with a labor-intensive child who comes with no instruction kit, can be overwhelming. Moreover, children classified with IEPs are likely to carry the stigma of their label in the terms set by the educational bureaucracy. Despite that, many parents are learning how to use the system. But in everyday life, what we have discovered ethnographically is that parents struggle not just with education, but with the broader issues of nurturing the personhood of a child with a difference, leading to forms of solidarity that verge on the existential; parents find themselves not only in constant battle with school systems but also reimagining what their child's condition means for their family, as well as their understanding of humanity. As Paulette Saint-Hilaire told us, "My husband and I pray over this: it doesn't finally matter whether Roland does well in school, much as we'd like him to learn his ABCs. What matters is that Roland becomes a good person, able to use his many talents to do some good in the world. That's what we want for Roland, and that's what we should all want for all our kids, special ed or not."

Support for these broader social needs may come from many sources: from prayer groups for Christian parents of children with disabilities, to groups such as Yachad founded by a new generation of activist Orthodox Jews who reach out to the often excluded disabled within their own ranks.

Recently, two mothers of special ed children self-published a book entitled "Shut Up About….Your Perfect Kid." Their tongue in cheek book title — calling attention to our culture's obsession with success — and their hilarious DIY videos along with their website3 , are built on irreverent but deeply honest humor that gets at fundamental truths about the complexities of raising children with disabilities in a world that valorizes a narrow range of achievements.

Authors Gina Gallagher and Patricia Konjoian bring offbeat humor to the topic of parenting LD children, a welcome antidote to the overly sober literature in the field. The book is also a serious resource by and for parents learning to navigate the complex new world they have entered with their atypical child:

We are not in any way saying that parents shouldn't be proud of their children. Most days (like those rare ones when they actually help with the housework), we're quite proud of ours. But as sisters and parents of two daughters with disabilities — bipolar disorder and Asperger's syndrome — we're proud of our kids for a completely different set of reasons. Reasons that sadly don't measure up to most people's high standards of imperfection. (2006, p. 6)

In a recent phone interview with the authors, they explained the experiences that motivated them to write their self-published book that has become an underground success.

There is no book out there on special needs like this. Most of them are so depressing. They portray the worst case scenario. 'It's not a death sentence — some of them make you feel that way — we talk about that — it's a mourning period that you have to get over that loss — not only are they not going to do that — they are going to have struggles. You talk and you see people of all economic, ethnic, religious backgrounds…we are all the same….

The authors' spirited resistance to the stigmatized categories imposed on their children is clearly more than idiosyncratic. It is concrete evidence of the widespread social distribution of moxie. The fact that the book has now been picked up by Random House — which will bring it out in a second edition in Fall 2010 — suggests that this stance has broad appeal that brings a new parental discourse into public visibility.

Conclusion

Sleeter did much to enrich our understanding of how the American educational system conceptualized learning disabilities. She was especially astute in analyzing how class and race stratification were smuggled into what initially seemed to be a liberatory transformation on behalf of children whose capacities had been denied. Her recognition of the role played by the Cold War and the unchallenged hegemony of the educational tracking system laid the groundwork for a more fundamental insight: the problem was not in individual children, but in the unspoken assumptions of privilege that inevitably came to shape which children received services appropriate to the new understanding of their disabilities. Sleeter's focus on how parental behavior was the engine of stratification in special education in that era — reinforcing middle-class white advantage — was central to her methodology. Her recognition of the catalytic role played by parents in the creation of and resistance to new diagnostic categories for atypical children had a profound impact on our own contemporary research two decades later. The framework she provided continues to yield insights into the crucial role played by families, as a key aspect for understanding how the American educational system works or fails to work for different kinds of children and their families.

So what has changed since Sleeter first wrote? Since then, the many legislative and legal initiatives strengthening disability rights in the educational arena and beyond — from the renewals and expansions of the IDEA, as well as the landmark passage of the Americans with Disabilities Act in 1990 — have reverberated into the social fabric.

As a result, a disability rights sensibility now shapes the everyday lives of many families with diagnosed children, providing not only a framework for navigating the complexities of official entitlements but a culture-changing perspective on the place of difference in contemporary America. This change in the zeitgeist helped fuel the landmark 1992 Carter decision 4 which gave parents the opportunity to reach into the private sector (and be reimbursed) to find education for their labeled children in the event that their public school district was not able to provide the recommended services. Inevitably, however, this once again favored middle and upper middle class families who could afford to lay out considerable tuition monies, sue their districts, and await reimbursement. It is only with initiatives such as the Partnership for Children's Rights — a New York City based program that provides pro bono legal counsel, as well as tuition support for low-income qualifying families — that the class inequalities are beginning to be addressed. The numbers of families still in need remains overwhelming.

Hierarchies of race and class remain intact in American educational life and have profound consequences for the school lives of children labeled with disabilities. Services may be prescribed by a child's IEP but their availability requires vigilant and ongoing familial advocacy, if not activism. Our interviews suggest that such vigilance is not confined to the white middle class. While our numbers are small, it is striking in our research that the moxie required to get a child through special education in New York City crosses the historically entrenched lines of privilege and discrimination. The expanding bureaucracy of special education virtually requires advocacy on the part of a parent if the enactment of IEP services into a child's daily school life is to be carried out. In this sense, the parents who told us their stories are Sleeter's unwitting heirs, as their efforts to fight for the rights and needs of their children makes clear.